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Changes In Symptoms


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#1 puzoozoo

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Posted 04 April 2013 - 05:54 AM

Hey (this is my first post, sorry if it's in the wrong section).


 


I've been diagnosed with Narcolepsy for about five years (i'm now 21)
and have been on Modafinil since the beginning, which didn't really do
much to start with but my symptoms, as annoying as they were, never
really got in the way. By that I mean I would recover from microsleeps
and catch up on my surroundings as if nothing happened or I could have a
very dedicated family to haul me out of bed as painful as it might have
been. Generally the latter wouldn't work so I would remain asleep but
catch up on any schoolwork etc. (I've spent my entire life making up for
what i've missed in school because i've been paralysed in bed). My last
year of high school was so stressful (a few factors, mainly an
unsupportive faculty) that i remember seeing very little sunlight over
the course of several months. I figured that my narcolepsy was triggered
by stress, so during times where i've had no obligations i stopped
taking my meds and kinda, just... let it be. If i needed to sleep i'd
sleep, and i would let my body do it's thing which oddly enough meant
that i wouldn't sleep for a longer period of time and be more rested.


 


Anyway... since i've started university things have changed...
weirdly. I haven't really been taking any medication unless it's close
to deadlines or exams. But my symptoms have taken a turn and i'm not
sure whether to be worried or not. Basically my sleep is a lot more
fragmented, and i keep waking up throughout my night, but i can wake up
just fine in the morning. I would have an okay amount of energy
throughout the day, enough so that  i can function and no microsleep or
cataplexy episodes have been seen by my friends. But now i feel tired
ALL the time, i have dark bags under my eyes but i can go a night or two
without sleep which in turn makes me feel awful.


 


I know narcolepsy can develop with age, and this is seriously strange for a narcoleptic to say.... but i miss sleep.



#2 DeathRabbit

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Posted 04 April 2013 - 09:23 AM

That sounds kinda like me. I had a more traditional narcolepsy set of symptoms long before my diagnosis. But now, it's like my Narcolepsy went rotten and it's doign a bunch of weird stuff it's not necessarily supposed to do.



#3 SleepyDays

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Posted 05 April 2013 - 07:47 AM

Have you guys gone back for another sleep study?

I'm going for another one in a couple weeks.

I went to my doc and said I think something more is going on ....because I'm waking up a lot at night.  I sleep for the first 3-4 hours and then it's frequent awakenings all night.  He's going to investigate this for me.

My doc thinks there is a possibility that I might have a second sleep disorder on top of the Narcolepsy which is causing the frequent awakenings at night.

I don't have sleep apnea.  He thinks it might be UARS....which usually isn't tested at most sleep clinics. It causes frequent awakenings.

Pain at night can also cause frequent awakenings.  I have some lower back issues....so it could also be something related to that.

I will keep you posted.  I'll get my results back at the end of May.



#4 Megssosleepy

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Posted 08 April 2013 - 10:37 AM

I have always have symptoms of N.  I even remember hallucinations from when I was 3 years old.  What brought me to the Doctors at age 28 was my fragmented sleep... Some nights I'd fall asleep super fast but wake up 10/20 times throughout the night.  Other nights I would toss and turn and never really get much sleep and when I did sleep I had such crazy vivid dreams that I was never rested.  

 

Zoo Zoo have you thought about taking Xyrem?  It's what I use to sleep through the night every night.  I still only get 6.5 to 7 hours of solid sleep, but its way better then waking up a ton with SP/HH all the time.



#5 h.wynn

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Posted 22 April 2013 - 09:31 AM

When I was 19 I had 3 months of insomnia. It has never happend again. Cant explain it.



#6 Gurr24

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Posted 13 May 2013 - 10:00 PM

You have had N much longer then I. this is like my 2nd year. But its been like 5 months since officially diagnosed. Do you think perhaps this is from the medication? Im not taking medication, im turning 16 soon. I am very conscoius about what i put into my body and what effects it will have one me. Taking medication for me was a HUGE NO. It would have helped mask the symtoms and maybe let me sleep without waking up during the night but it has so many side effects that for me it isnt worth it. Medication generally after a long time starts to mess with you and unbalance the system in the body. So im thinking its probably the medication?? But i dont really know. I like to think my body has the ability to heal this itself. and sure enough my N is getting much better. I have started to get some control on my cataplexy.

 

    It doesnt seem like a bad thing that you have energy through out the day and no symptoms of cataplexy. But if it is interfering with your life then perhaps let your doctor know.



#7 Hank

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Posted 14 May 2013 - 12:24 PM

You have had N much longer then I. this is like my 2nd year. But its been like 5 months since officially diagnosed. Do you think perhaps this is from the medication? Im not taking medication, im turning 16 soon. I am very conscoius about what i put into my body and what effects it will have one me. Taking medication for me was a HUGE NO. It would have helped mask the symtoms and maybe let me sleep without waking up during the night but it has so many side effects that for me it isnt worth it. Medication generally after a long time starts to mess with you and unbalance the system in the body. So im thinking its probably the medication?? But i dont really know. I like to think my body has the ability to heal this itself. and sure enough my N is getting much better. I have started to get some control on my cataplexy.
 
    It doesnt seem like a bad thing that you have energy through out the day and no symptoms of cataplexy. But if it is interfering with your life then perhaps let your doctor know.


So glad you have found ways to manage your symptoms medication free.

While I agree that our bodies have an amazing way of healing themselves, your body will not restore your lost Orexin/ Hypocretin cells. They are now toast.

I feel a responsibility to my family and other drivers to take medication for Cataplexy. The idea of a collapse ever causing severe injury or death (myself or others), and not making a good-faith effort to prevent it- I could never forgive myself.

#8 SleepyDays

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Posted 29 June 2013 - 09:53 AM

I thought it was time to report back to you guys.  I've been on the CPAP machine for over a month now.  And it's actually helping reduce the brain fog and helping my mood.  My sleep doc said that the CPAP machine can sometimes give you even just a little push into feeling a bit better when you're living with N. And I have to say, it's working.  Again, just to be clear, I don't have sleep apnea.  But I definitely think I have a bit of airway resistance while sleeping and getting this small bit of extra oxygen (and not having to work so hard to breath over night) has given me a bit of a boost each day.  I wake up in a better mood...I don't feel as tired in the morning and even though I'm still on meds for the cataplexy and EDS, I've been finding the brain fog isn't as bad.  I actually feel like my brain is working the way it used to.  Has anyone else tried CPAP on top of their other N tx?  For me, just being able to escape the brain fog, has made it worth sleep with the hose on.